You may be aware that many conversations about autism are quite divisive. One of these conversations centers around the idea of whether autism is “bad thing”. This is often discussed more in terms of whether autism is a “disease” or, more mildly, even a “disorder”. I’m not going to delve deeply into that today, but I want to talk about a sentiment that often accompanies some arguments on this topic. Some people say that they like being autistic, and others argue that that means they aren’t “actually autistic” because of that.
I’d like to state for the record that I both believe in self-diagnosis, because official diagnoses are expensive and can be difficult to acquire, and strongly disagree with the idea that someone isn’t “autistic enough”, as well as the notion of doubting someone else’s diagnosis. I want to further disclaim that I understand one single sentence does not encapsulate someone’s entire experience with autism, nor are they obligated to share all their struggles to “prove” they’re autistic. Every autistic person is different! What I say here is entirely my own opinion and experience. I don’t mean to imply that anyone who shares this sentiment is wrong or bad in any way. Thank you for understanding.
With all that said, I’d like to share my thoughts on “liking” being autistic. I personally find the idea quite confusing. I think there are some positive things about autism but, in my experience, they fall far short of the negatives. Something good about autism for me is the passion it gives me. I find it frustrating that this passion can lead me to ignore my own well-being and its duration is unpredictable but, to be honest, the way I feel about my special interests gives me the strength to keep going.
Another thing would definitely be how observant and curious I am. I don’t mean that as a boast in some way, just a statement of fact. I’m a very curious person—to the point that it frustrates people around me at times, though much less now than when I was younger—and, maybe partly because I will look everywhere but in someone’s eyes, I notice things other people don’t. I think that’s pretty neat!
It’s a molehill compared to the ginormous mountain that is my sensory issues, but I love the way I interact with music. I can’t fully explain it, but there’s this connection I have with music. I’m able to pick out different instruments easily and enjoy the more subtle aspects of a song. I think that’s beautiful and quite lucky for a pianist.
Unfortunately, that’s the end of it. We now have to move on to the much larger section that is the negatives. The first and foremost aspect to me would be the social repercussions. This is the one thing that could possibly be changed, so it’s perhaps the easiest way to start.
Like just about every autistic person, I was bullied as a kid. It was made worse by the amount of time it took for me to realize people could lie to me, not to mention the far greater amount of time to understand that I was weird. I skipped right from that epiphany to severe social anxiety. Absolutely no in-between. It certainly didn’t help that the adults in my school did nothing but tell me to simply ignore it. Made even worse by the fact that they refused to give me an IEP until just before I had to go to a school for kids with more intense education needs, but that’s a story for another day.
It, of course, doesn’t end there. People still often find me off-putting or strange. Older people tend to be more willing to look past my oddities and usually find me sweet or cute, but I struggle to understand people my own age and vice versa. I don’t have any of the typical experiences most people my age do so I struggle to make conversation, not to mention that I don’t express my emotions in quite the same way. People tend to be impatient when I struggle over my words or my stutter acts up and I’m pretty bad at doing back-and-forth conversations and not just rambling about my interests.
There’s also the whole “being frequently stared at in public” thing. Part of this is that I’m a young person with a mobility aid but a major aspect of it is just the way I move. The way I hold my body. My default facial expression involves wide eyes and parted lips, looking around everywhere instead of focusing on just one place—even when I’m walking. I wear my noise canceling headphones when I’m in a place with loud or overlapping sound. I’m constantly moving, usually rocking back and forth or side to side when I’m sitting and moving my hands or just using a fidget. A lot of this movement is completely unconscious but, importantly, it keeps me calm and helps me process everything around me.
It’s hard to explain the impact all this has. When I was younger, I was blissfully unaware of it all. By now I’ve internalized all the judgment I’ve gotten—even that which has never been directly expressed to me, but I know has been to other people—and I can’t fully put it out of my mind, at least not in public. It’s not so bad when I’m by myself but every time I realize I’m doing something “weird” around other people, I feel so self conscious. It really doesn’t help that I’m not really able to stop—every time I try, I notice that I’ve started doing it again only seconds later.
After the social aspect is most definitely my sensory issues. I plan to talk more about that in the future but, in short, I am literally always in some degree of distress from sensory input. No matter what I do, what my mom does to help, it all falls flat. My mom is, thankfully, really supportive. She does everything she can but, unfortunately, there just isn’t that much that can be done. It’s essentially the same situation as my chronic pain; it can be temporarily lessened or worsened, but it’s always there at a severe level.
One thing I find particularly hard about this is the impact it has on my clothing. I can, on some days, tolerate fabric on my lower legs, but I cannot stand it on my thighs. I love skirts, I always have, but I find it really frustrating not to even have the option of wearing pants. I tried to do it the other day and had to awkwardly shimmy them off in the car after less than ten minutes. I’m proud that I managed to stand it for even that short amount of time, though.
It’s very difficult to manage texture sensitivity, especially when it comes to fabrics. It’s nearly impossible not to be in contact with fabric at any given time, save for being in the shower. There’s this weird thing that happens where if I feel two pieces off fabric sliding against each other, I feel it in my teeth. It’s the exact same feeling as when I hear a scraping noise, even though I can’t hear it.
I really struggle with the fact that my texture sensitivity can completely flip-flop, for lack of a better term. Usually I’m quite fond of soft textures but, on occasion, I just randomly can’t stand them. It’s immensely frustrating because that’s what I’m surrounded by, because they’re safe for me most of the time.
Another especially difficult thing is food. On an average day, I have a lot of food sensitivities. I can’t handle mushy textures, foods with too many differing textures or anything excessively chewy. On occasion, though, I just suddenly can’t stand any variance in food texture. I end up basically dependent on pasta, fruit juice smoothies, yogurt, pudding, ice cream, sometimes oatmeal and possibly baby carrots or apples. The latter two really depend on how much I can stand the slight unpredictability.
Sound is challenging for me as well. I struggle with overlapping noise, most of all, as well as scratching or scraping noises and wet smacking type sounds. I also have difficulty with literally any noise that I can’t control. The unexpectedness of it is really hard for me. As you can guess, headphones are my best friend.
Speaking of things that are unexpected, let’s talk about the need for routine and planning. I can’t stand not having a concrete plan for things. If I don’t know what’s going to happen, I get incredibly stressed. My routines come more in the form of doing things in certain orders rather than at certain times but that doesn’t make them any less difficult. I can’t fall asleep without taking my meds, having a snack and doing puzzles for ten or so minutes. It’s incredibly exasperating, especially when I’m really exhausted and still have to go through all the motions before I can finally sleep.
Not quite a routine, but I want to talk a bit about doing things in a very particular way. For me, this manifests especially in the way I eat. I always eat so that the very best bite of food is last. I mix some foods, when it’s considered to be a whole dish—for example, rice with meat and vegetables—but with things like putting a biscuit or mashed potatoes under stew or mixing corn and mashed potatoes, I can’t handle it and get incredibly grossed out seeing other people do it. It genuinely causes me distress.
Which, on the note of distress, let’s talk about emotional disregulation. I have gotten a bit better but still, I have major emotional instability. I know, of course, that my moods don’t come out of nowhere—it’s usually a “straw that broke the camels back” situation—but that doesn’t make it easier when I start crying at a small inconvenience or snap because something I was looking forward to got canceled. It’s made worse by the fact that I really struggle to explain what I’m feeling, or even label it. Even further because I stutter quite a bit when I’m upset, sometimes losing my words entirely.
Something I plan to talk about more later is the response I have to strong emotions. It’s incredibly difficult for me to manage my emotions. For my whole life I’ve engaged with forms of self harm and for eight years now, I’ve struggled with cutting. When I’m very upset—whether I’m anxious, sad, stressed, mad, any variety of indescribable difficult emotion—my immediate response is to hurt myself. It’s just the easiest way for me to calm down. That might be scratching, hitting myself, pulling my hair, picking my skin, digging my nails into my skin or cutting. It’s always so difficult for me to calm down without some sort of intense sensation like that.
This is, of course, not a comprehensive view of my experience with autism—in fact, I suspect it’d take me well over half a year to come close to such a thing—but it is a fair summary of what most impacts me. With all that in consideration, I think it’s rather easy to see why I could never say I “like” being autistic. I do think I would be quite a different person without it, that much is obvious in my opinion, but I just don’t quite understand the idea of “liking” it. Not to say that I necessarily dislike it, but it does cause me more harm than good.
To conclude, I want to reiterate that this is solely my experience. I don’t think I’m more valid as an autistic person than anyone who says they like being autistic. I don’t think that they’re “wrong” to say it. I just wanted to add my perspective on the matter because I think more nuanced views of autism can at times be hard to find, particularly with the popularity of short form content at the moment.
Thank you for sticking with me through all this. I hope you leave with a bit more understanding of autism than you had before and have a lovely day.